23 Signs You Grew Up With Ehlers-Danlos Syndrome

Were you known as a child as a double-jointed? Did their childhood injuries go down the memory as clumsy and doctors informed them the pain was due to growing pains?

You are not alone–and you are certainly in no way imagining things.

The Ehlers-Danlos Society estimated that there are 1 in 5,000 sufferers of EDS in the entire population of the world, as of most patients it can take an average of 10-12 years before a proper diagnosis is made . That means countless adults are only now discovering that their “weird” childhood experiences were actually 23 signs you grew up with Ehlers-Danlos Syndrome.

With this in-depth guide, you will get to know how to recognize the most common signs of EDS, which begin in childhood, the reasons why this specific condition is often ignored by doctors, and what you can do in case these symptoms are familiar to you.

The thing is this: your body has been wanting to speak with you all the time.

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a collection of inherited connective tissue diseases that impact collagen the protein that binds your whole body together. It is recommended that you consider collagen as the glue that holds your skin, joints, blood vessels, and organs.

In case this glue does not work correctly, a cascade of symptoms in the whole body is produced.

EDS is recognized to have 13 types, the most prevalent one being hypermobile EDS (hEDS). They differ in the severity and symptoms, but they have some common features that can be observed in childhood.

The following is what complicates the diagnosis of EDS:

• The symptoms target various body systems.
• There are numerous symptoms that are attributed to being normal childhood problems.
• There is no one particular test that is definitive on the most prevalent type (hEDS).
• Physicians are only given little training about connective tissue disorder.

Understanding these 23 signs you grew up with Ehlers-Danlos Syndrome can finally provide the answers you’ve been searching for.

Why EDS Often Goes Undiagnosed in Childhood

It is important to find out the reasons behind the lack of diagnosis of so many children with EDS before delving into the signs.

The issue begins with perception.

A hyperactive child could be congratulated during dancing or gymnasts. When a chronic pain is experienced by a child, the child is branded as a sensitive or to be seeking attention. Not getting enough sleep is one of the reasons that lead to fatigue when in actual sense, some habits keep you exhausted but EDS fatigue goes way further.

This is aggravated by medical training. The education physicians get on connective tissue disorders is less than a few hours in their complete medical education career.

The result?

Generations of individuals who have been raised believing that they were broken but not knowing why.

Physical Signs You Grew Up With EDS

Sign #1: You Were the “Double-Jointed” Kid

This is probably the best known indicator. Unless you could bend your fingers backwards, or touch your thumb and your forearm, or twist your body to amaze your friends, you could not be considered flexible.

The joint hypermobility is one of the striking EDS characteristics.

The Beighton Score is used as a diagnostic instrument to determine the level of hypermobility at nine points. This test is high in many EDS patients even without them being aware that they were being observed to be quite flexible.

Sign #2: Frequent Sprains, Dislocations, and Subluxations

Did your ankles just give way when you were walking? Did you have your shoulder slip out of position in the course of non-strenuous activities?

Children affected with EDS have instability of joints which result into:

• Repeated ankle sprains
• Overhead reaching causes shoulder dislocations.
• Slipping out of place Kneecaps.
• Fingers jamming easily

The inability of the joint to hold together correctly in the parents and coaches was referred to as clumsiness.

Sign #3: You Were Labeled “Clumsy” or Uncoordinated

Clumsiness–proprioception (body’s sense of location in space) is impaired among EDS patients.

You might have:

• S ran into door frames all the time.
• Tripped over nothing
• Dropped things frequently
• Difficult in sports that involved coordination.

This wasn’t carelessness. Your body literally was not able to process the spatial information properly.

Sign #4: Flattened feet and Abnormal gait.

The children with EDS can develop flat feet (pes planus) and walk with an abnormal gait. Orthotics may have been put on you when you were a child or your parents may worry how you walk.

This is related to the general joint laxity on your feet and ankles.

Sign #5: Problems with TMJ at an Early Age.

Did your jaw click, pop, or lock? Temporomandibular joint dysfunction is very prevalent in EDM patients and may start at childhood age or in adolescence.

You might have experienced:

• Jaw pain when eating
• And when you open your mouth it clicks.
• Hard to open up your mouth, eh?
• Pains in the head which is caused by the tension in the jaw.

Pain-Related Signs From Your Childhood

Sign #6: “Growing Pains” That Never Stopped

The point is the following: growing pains are a fact, but as a rule they disappear by adolescence.

When you hit your teens and adulthood and you still have your growing pains, then they were probably not growing pains. The onset of chronic musculoskeletal pain at childhood is a major warning factor of EDM.

Sign #7: Chronic Fatigue that is unaccounted.

Did you always feel fatigued when you were a child? Were you more in need of a rest than other children? Patients with EDS tend to have a severe fatigue condition the body overworks itself trying to provide compensation to unstable tissues and joints.

This fatigue is even more than usual fatigue. EDS fatigue is not limited to the destruction of your vitality by bad habits as well.

Sign #8: Headaches and Migraines Since Early on.

The child with EDS is often affected by chronic headaches and more specifically those cervicogenic headaches (those that originate in the neck).

Neck instability typical with EDM has the potential to be the cause of:

• Tension headaches
• Migraines with aura
• Occipital neuralgia
• Certain positions induce headaches.

In case you had been experiencing headaches as your old friend since childhood, EDS might be the root cause.

Sign #9: Spasms and Cramps of Muscles.

Muscles are forced to work extra hard to hold the joints that are being held by collagen. This overstrain causes permanent tension of the muscles, cramps and spasms- even in childhood.

Digestive and Internal Signs

Sign #10: Chronic Stomach Problems

The gut is full of connective tissue in huge quantities. When such a tissue is defective, the digestive complications ensue.

Children who have EDS are likely to suffer:

1. Symptoms of Irritable Bowel Syndrome (IBS).
2. Chronic nausea
3. Gastroparesis (stomach taking long to empty)
4. Acid reflux and GERD
5. Food intolerances

Most patients of EDS recall being sensitive in terms of their stomachs all their lives.

Sign #11: Feeling Dizzy or Fainting

POTS (Postural Orthostatic Tachycardia Syndrome) normally goes hand in hand with EDS. You might have:

• Grew dizzy on standing up.
• had heart aching when it was in vain.
• In fact, lost consciousness as a child.
• Felt worse in hot weather

These symptoms of autonomic dysfunction usually begin in childhood but get serious in the period of puberty.

Sign #12: Easy Bruising That Concerned Everyone

Did you always get bruises that you could neither understand nor explain? Did your bruising cause adults to raise unnecessary questions about the life you lead in your house?

The EDS patients have fragile blood vessels and thin skin making them predisposed to bruising due to the slightest trauma- or even no visible trauma. Adequate sleep assists the skin to recover and though some will seek solutions to wake up with flushed skin, EDS patients find it hard to have their skin bruising too easily.

Skin-Related Signs of Childhood EDS

Sign #13: Unusually Soft, Stretchy, or Velvety Skin

Thrust your fingers through your flesh. Is it unusually soft? Is it elongated in a way that it goes beyond normal and gradual returns?

Another typical EDS manifestation is skin hyperextensibility. And other people might have said that your skin was soft–nearly velvety.

Sign #14: Scars That Healed Poorly

When you were a child and had an- scrape or cut, did they:

• Slow to heal as compared to usual?
• Produce broad, papery or atrophic scars?
• Split open easily?
• Get leave marks that were not similar to scars of other kids?

A characteristic of a malfunctioning connective tissue is poor wound healing.

Sign #15: Stretch Marks when a Teenager.

Although the presence of stretch marks during puberty is a normal physiological process, EDS patients tend to form them in greater volumes and at a lower age. They can be located in uncommon places as well such as the upper back, arms, or knees- not necessarily the common growth places.

Other individuals have other skin and hair related issues which they may investigate without even considering the possibility of the presence of connective tissue.

Neurological and Cognitive Signs

Sign #16: Brain Fog and Concentration Difficulties

Did you have difficulties making attention at school? Feel like you are in brain fog and you are thinking through mud?

Patients with EDS complain of cognitive problems that include:

• Poor concentration
• Memory problems
• Word-finding difficulties
• Mental fatigue
• Processing speed issues

Teachers might have believed that you are not working hard enough. As a matter of fact, your brain was struggling with fatigue and general body inflammation.

Sign #17: Since childhood, sleep Problems.

Most EDS patients are evasive to quality sleep. You might have experienced:

• Difficulty falling asleep
• Waking frequently from pain
• Always unrested even after getting enough sleep.
• Restless legs
• Sleep apnea

Parents of babies with EDS also report seeing atypical patterns, like with such issues as 6 month sleep regression, only not resolving at the expected developmental stage.

Sign #18: Anxiety That Seemed to Come From Nowhere

This is one of the factors that most people are not aware of; dysfunction of the autonomic nervous system in EDM may produce physical symptoms that resemble those of anxiety.

Racial heart, lightheaded, sweaty, and that “fight or flight” sensation can be a physiological response, and not necessarily psychologically determined.

With this said, undiagnosed chronic illness, by definition, causes actual anxiety as well. Anxiety treatments work with many EDS patients and help them cope with both emotional and physical aspects.

Emotional and Social Signs

Sign #19: Being Called a Hypochondriac

This one hurts.

You are not alone in case you were labeled a hypochondriac, attention-seeker, or drama queen as a child. Most of the EDS patients carry the shame about their symptoms within them as they were constantly informed that nothing was wrong with them.

Your symptoms were real. The healthcare system never appreciated them.

Sign #20: Struggling in Physical Education Class

PE was torture to most EDS children. You might have:

• Been picked last for teams
• Suffers too much post-exercise pain.
• Required more rest periods.
• Has been accused of excuse-making.
• Weaponized on yourself a lot.

Well, your body was not constructed to meet the same physical requirements as that of your peers, but no one could understand why.

Sign #21: Feeling “Different” From Other Kids

EDS patients tend to relate to a universal feeling of strangeness without knowing why. Whereas other children ran and played freely, you required a rest. Whereas they recovered quickly of injuries, yours persisted.

Establishing good relationships is beneficial to any chronic disease. Some communication styles have been found to prolong the relationship duration and this is of great significance in the management of invisible illness.

Sign #22: Early Vision Problems

EDS is normally accompanied by eye problems. You could have experienced, as a child, the following:

• Early need for glasses
• Astigmatism
• Problem with tracking the eye movements.
• Dry eyes
• Sclera that is blue (whites of eyes).

Other EDS patients also have more severe eye conditions that need to be treated in the same way as cataract surgery sooner than they should.

Sign #23: Dental Issues Despite Good Hygiene

Did you have:

1. Crowded teeth?
2. High, narrow palate?
3. Oral cavities irrespective of excellent brushing practices?
4. Gum problems?
5. Cracked or chipped teeth?

There is also connective tissue that has an influence on dental structures. The dental history of many EDS patients can be dated back to childhood.

What To Do If These Signs Sound Familiar

Reading through these 23 signs you grew up with Ehlers-Danlos Syndrome might feel overwhelming–or incredibly validating.

Here’s your action plan:

Step 1: Document Your History

List all the symptoms you can recall when you were a child. Include:

• Age of onset
• Frequency and severity
• What made it better or worse
• How doctors responded

Step 2: Identify an Informed Provider.

Identify a geneticist, rheumatologist or a physician who has experience with connective tissue disorders. Ehlers-Danlos The Ehlers-Danlos Society has a provider directory.

Step 3: Knowledge of the Diagnostic Process.

Diagnosis Diagnosis will usually involve:

• Extensive personal/family history.
• Physical test based on standardized test.
• Some of them can be genetically tested.
• Ruling out other conditions

Learning about the genetic testing and specialist visit coverage amounts to health insurance would allow you to budget in advance.

Step 4: Connect With the EDS Community

Online and face-to-face support groups are invaluable, offering the priceless chance to connect with other people who have gone through it.

Step 5: Self-Compassion Practice.

These years of rejection are a psychological challenge. Understand that you had a good experience and the healing process is to process the past.

Self-care in this journey implies that you take care of all areas of health. Don’t add minor problems to minor issues–understanding how to dispose a cold in the shortest period of time is important when your health is already compromised.

Understanding the Path Forward

Diagnosis-or-recognition that you have a high probability of having EDS is not a finish. It’s a beginning.

It means:

• you were fighting through childish days.
• Treatment options exist
• Your life can be changed to suit you.
• You’re not alone

Some EDS patients talk of their diagnosis being given the user manual to their various body parts.

Nevertheless, a person with EDS will have to live with constant health care in mind. This involves not doing things that drain you when you really do not need it such as having a usual morning stop that makes a mistake that drains you badly when you are so much in need of energy.

It is especially important to have mental health support. The parents having EDS might have other difficulties, and such states as postpartum depression can also be interconnected with chronic disease in more complicated forms.

Frequently Asked Questions

Conclusion: Your Body Was Speaking—Now You Can Listen

Recognizing these 23 signs you grew up with Ehlers-Danlos Syndrome may finally explain years of confusion, dismissal, and self-doubt.

Key takeaways:

• Symptoms of EDS usually start during childhood though they remain not diagnosed over years.
• Hypermobility, frequent injuries and abnormal skin are physical signs that are significant.
• Systemic symptoms such as fatigue, digestive problems and pain are also vital.
• A lot of patients with EDS used to be wrongly labeled as clumsy, hypochondriacs or sensitive.
• Special evaluation is needed to make the correct diagnosis.
• Quality of life can significantly be enhanced by validation and proper treatment.

Your childhood life is understandable now. You were not weak and dramatic or broken but you were living with a non-diagnosed connective tissue disorder.

What’s your next step? When these symptoms were familiar with your experience, then today is the day to begin that symptom journal. You need answers to those questions that your childhood self needed, and you must have them.

Write in comments of your story. What number of these signs did you have as a growing up? The fact that you know can make someone realize their path finally.

Medical Disclaimer: The article is not medical advice and is rather just informational. Diagnosis of Ehlers-Danlos Syndrome should be adequately done by a certified medical practitioner. In case you suspect of EDS, then refer to a geneticist, rheumatologist or a physician who is familiar with connective tissue disorders.